Lyme Disease Education and Support Groups of Maryland
OPPOSED- HB 1168
Commemorative Months – Lyme Disease Awareness Month
March 3, 2012
Dear Committee Members,
The letter sent to you earlier today has three main points with full documentation provided. To summarize our concerns:
1. The bill is not necessary. The State of Maryland, by way of the Governor, previously designated May as Lyme Disease Awareness Month over two decades ago. It has since been recognized and celebrated with great fan-fare as an annual tradition by our Maryland support groups, the Maryland DHMH and all national and international Lyme-related organizations.
2. The wording in the preamble contradicts the policies set forth by the Centers for Disease Control (CDC), and the Maryland Department of Health and Mental Hygiene (DHMH). Granted, we do not always agree with those policies, however, we can not support a bill with questionable wording that will be disputed by official government agencies.
3. In the future, and only if the need arises, it is our goal to work together to make good use of the legislators time by presenting fresh, innovative and essential ideas for legislation designed to improve the health of those suffering today, and protect those who contract Lyme in the future.
Thank you for your consideration and your continuing support. We hope you have a great summer- and don’t forget, do a tick check!
Sincerely,
Lucy Barnes
Lyme Disease Education and Support Groups of Maryland
OPPOSED- HB 1168
Commemorative Months – Lyme Disease Awareness Month
March 3, 2012
The Honorable Susan Lee and Joseline A. Pena-Melnyk
cc: Maryland Health and Government Operations Committee Members
House Office Building
Room 209
6 Bladen Street
Annapolis, MD 21401
Dear Representatives,
I am contacting you on behalf of the Lyme Disease Education and Support Groups of Maryland, additional Lyme groups and organizations from across the country, volunteer patient advocates, and individual patients concerning HB 1168, the Commemorative Months – Lyme Disease Awareness Month bill. We only learned about this bill a few days ago and understand a hearing date is imminent. For that reason, we will collectively share our concerns with you and the Committee through this letter.
Although we appreciate the spirit behind HB 1168, and the intent of Maryland legislators to help us promote Lyme disease awareness, the bill at this time is unnecessary. One of the main reasons is that the same issue covered in HB 1168- designating May as Lyme Disease Awareness Month- was previously addressed by one of Maryland’s Governors over two decades ago. As a result, the annual May is Lyme Disease Awareness month tradition is alive and continues to flourish today.
In fact, the Governor at the time was not “required”, as in HB 1186, to designate May as Lyme Disease Awareness Month, he voluntarily took the lead on this issue after being approached by one of our original group members. If you are relying on the current fiscal note for HB 1168 and its attached exhibit to prove true Maryland’s previously determined commemorative dates, please be advised the list only covers a small portion of Maryland’s history, the years 1996 forward. To learn more about Maryland’s commemorative dates you can contact the Maryland State Archives.
In past years Maryland’s Governors, the Maryland Department of Health and Mental Hygiene (DHMH), Lyme disease support groups and residents across the State, as well as Lyme-related organizations worldwide have all acknowledged, participated in and/or supported the month of May as Lyme Disease Awareness Month.
As a result of the original designation, hundreds of programs and special events have been presented by Maryland volunteers to benefit residents, health care professionals and even members of the Maryland General Assembly. Please refer to our website- www.MarylandLyme.org - which lists some of the May Lyme Disease Awareness Month events that took place in Maryland in 2011, noting two very successful awareness campaigns that originated in our State and spread nationwide. One, the Racing Lyme Disease Awareness campaign, resulted in over 2,000 people per day voting on our Lyme Disease Awareness race car, with the total number of people reading our awareness message exceeding 18,600. You can easily locate more information about Maryland’s May is Lyme Disease Awareness Month efforts by clicking on the left side of our website on the heading “May Awareness”.
Brief History- As mentioned above, one of our first volunteer Lyme disease advocates, a mother determined to educate as many people as possible, prompted Maryland Governor William Donald Schaefer to designate the month of May to be Lyme Disease Awareness Month shortly after he took office, making Maryland the first state to establish this annual designation and tradition. Since that time several of Maryland’s County governments on both the eastern and western shores have also proclaimed May as Lyme Disease Awareness Month in their local jurisdictions, with some presenting our support group leaders with certificates annually to uphold the tradition and help raise awareness at a more local level.
Approximately 12 years ago, on May 4, 2000, the Maryland Department of Health and Mental Hygiene (DHMH) officially recognized May as Lyme Disease Awareness Month in a press release. On May 6, 2008, in conjunction with the State’s ongoing May Lyme Disease Awareness efforts, the Maryland DHMH launched a new campaign, “Maryland Get Ticked Off!”, which featured educational brochures, posters, fact sheets and magnets that local health departments distributed to their residents.
The month of May is also recognized nationally and world-wide as Lyme Disease Awareness Month, with the United Kingdom adding an additional “Tick Alert Week” from the 25th to the 31st of May.
During his time in office, our current Governor, Martin O’Malley, has re-affirmed the State’s original designation by continuing to recognize May as Lyme Disease Awareness Month. In fact, upon request, and to confirm his strong commitment to the health and well-being of Maryland residents, Governor O’Malley issued an official proclamation for our groups shortly after taking office in May 2007. In turn, we distributed a press release and drew media attention to Lyme disease by way of articles published in newspapers across the state. Governor O’Malley’s commitment to the residents is as strong today as it was when he took office, therefore, “requiring” him to do what he has already accomplished seems redundant.
Additional Concerns- Beside the fact that the issue addressed in HB 1168 is presently covered, we feel it is important to mention there are additional concerns regarding the bill’s wording that may elicit a negative response from government officials. Sections of the “Preamble”, according to the Centers for Disease Control (CDC) and the Maryland Department of Health and Mental Hygiene (DHMH), are not in agreement with positions held and publicized by these two entities. Attached is a brief outline of some of the problematic wording. We sincerely hope you will consider the attached references before moving forward with a bill that is not necessary, and one that may put your office in a precarious situation for not observing or supporting established state and federal government positions.
The Lyme Disease Education and Support Groups of Maryland, along with the national Lyme Disease Association and its affiliates, have worked with Maryland legislatures and staff members in the past, providing oral and written testimony on Lyme related issues. We continue to share occasional educational updates with our legislative offices to keep them informed. In the future we hope that when the need arises, we can work together to make good use of the legislators time by presenting fresh, innovative and essential ideas for legislation. We regret HB 1168 is not something that is needed, or that will be beneficial to the State or its residents.
Sincerely,
Lucy Barnes
Director, Lyme Disease Education and Support Groups of Maryland, for herself and the undersigned national and state organizations, volunteer advocates and patients.
Lyme Disease Education & Support Groups of Maryland
Lucy Barnes, Director
Harford County Lyme Disease Support Group, Inc.
https://sites.google.com/site/marylandlyme/md-support-groups
Mid-Shore Lyme Disease Association, Inc
https://sites.google.com/site/marylandlyme/md-support-groups
Central Maryland Lyme Disease Support Group
https://sites.google.com/site/marylandlyme/md-support-groups
Maryland Volunteer Patient Advocates
https://sites.google.com/site/marylandlyme/md-support-groups
Lyme Disease Association of Southeastern Pennsylvania, Inc.
Lyme Disease Association of Southeastern Pennsylvania, Inc.
New Jersey Lyme Disease Resource
Oregon Lyme Disease Network
Ridgefield Lyme Disease Task Force
http://www.ridgefieldct.org/content/54/1527/default.aspx
Newtown Lyme Disease Task Force
http://www.brookfieldct.gov/docs-forms/Article/lymedesease.htm
[NOTE- Addresses and personal information have been removed before posting publicly.]
ATTACHMENT
OPPOSED
HB 1168, Commemorative Months– Lyme Disease Awareness Month
Sponsors- Delegate Susan Lee and Delegate Pena–Melnyk
Cosponsors- None
Senate Bill- None
Partial List of Inconsistent Wording Regarding HB 1168:
1. “FOR the purpose of requiring the Governor to proclaim a certain month as Lyme Disease Awareness Month.”
Please see attached letter addressing this point. May was previously designated by the Governor of Maryland to be Lyme Disease Awareness Month approximately twenty years ago. Our current Governor, The Honorable Martin O’Malley, has willingly recognized and upheld the pre-established designation and enduring tradition during his administration, as have other Maryland Governors.
2. “WHEREAS, According to the Centers for Disease Control and Prevention, Lyme disease is the most common rapidly emerging infectious disease not limited to age, ethnicity, or geographical area;”
We want to clarify that a review of the CDC website indicates the individual states determine which counties are endemic for Lyme disease. The Council of State and Territorrial Epidemiologists (CSTE) determines the surveillance criteria used to determine if a county is endemic. Although some may feel differently, the CDC and various states and counties, using data based on the CSTE criteria, indicate Lyme disease IS geographically limited.*
3. “WHEREAS, Ticks transmitting Lyme disease can be found in woods, parks, yards, and on beaches throughout Maryland and the United States;”
We want to clarify that the CDC and other government agencies feel this is not an accurate statement. The CDC specifically states it is NOT true that ticks transmitting Lyme disease (blacklegged ticks, Ixodes scapularis and western blacklegged ticks, Ixodes pacificus) can be found “throughout” the United States. Additionally, they report:
“It is important to note that the pathogen that causes Lyme disease is maintained by wild rodent and other small mammal reservoirs, and is not transmitted everywhere that the blacklegged tick lives.”
The CDC provides a variety of maps of the ranges of various ticks, maps indicating Lyme disease risks, and also maps indicating the official reported cases.
4. “WHEREAS, Increasing numbers of new cases of Lyme disease are reported each year in Maryland and across the United States, while numerous cases go unreported or undetected;”
We want to clarify that the CDC and the Maryland DHMH official numbers indicate new cases of Lyme disease have NOT increased each year in our state. In fact, both agencies report the official number of new cases have steadily dropped from a high of 2,576 in 2007, to 1,163 confirmed cases in 2010. Furthermore, incident rates have also seen a decline, from 45.8 in 2007, to 20.1 in 2010. Please see the CDC’s reported figures below. To note- As support group leaders we continue to see an increase in the number of sick patients. The reported decrease in official numbers may be a result of recent changes made to the surveillance criteria.
2007 Maryland Lyme- Total Cases- 2,576
2008 Maryland Lyme- Total cases- 2,220
2009 Maryland Lyme- Total Cases- 2,026
2010 Maryland Lyme- Total Cases- 1,617
(10 years out of the last 20 years CDC reported a decrease in reported case numbers)
Incident Rates Lyme Disease in Maryland
2007 2008 2009 2010
45.8 31.0 25.7 20.1
5. “WHEREAS, Lyme disease is difficult to diagnose because it imitates other
conditions and there is no reliable test to determine infection;”
We want to clarify that according to the CDC they feel this blanket statement is “misleading” and they believe the CDC’s recommended tests and testing methods have very good sensitivity*. The CDC specifically refutes this claim and states:
“You may have heard that the blood test for Lyme disease is correctly positive only 65% of the time or less. This is misleading information. … Several weeks after infection, currently available ELISA, EIA and IFA tests and two-tier testing have very good sensitivity.”
* NOTE- The Lyme Disease Education and Support Groups of Maryland, along with many treating physicians and Lyme patients, do not always agree with the CDC’s or DHMH positions or opinions with regard to Lyme disease surveillance, diagnosis and treatment. However, we also feel it is paramount that information must be as accurate as possible and supported by the official literature to prevent legislators and supporters of the bills from being accused of "misrepresentation" by government officials.